Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Saturday, June 25, 2011

Bitter Truth and Gritty Reality

A friend sent me a link to an article in the Huffington Post by Timothy Shriver, Chairman of the Special Olympics and long time advocate for those with intellectual disabilities. In part Shriver was inspired to write because of a series of articles in the New York Times and specifically the death of Jonathan Carey. Carey was a 14 year old man with autism that died in the care of the State of New York. The state did not kill Carey but sure did play a significant role in his needless and tragic death. What has struck me about the story of Carey's death is the lack of a response. Just another person with a disability that is dead. Ho hum. This makes for filler on newscasts and newspapers. Worse yet, Carey is the tip of the iceberg according to Shriver--and he is sadly correct. The death of people with a disability is somehow seen not as tragic but a release from their suffering. This makes the general public feel good but scares me to death. It is indicative of a social, governmental and health care failure. This has led Shriver to postulate:

"How is it possible that more than three decades after the United States began to desegregate schools for people with intellectual disabilities, more than two decades after the United States passed the Americans with Disabilities Act, and five years after the United Nations adopted the Convention on the Rights of Persons with Disabilities, a massive dignity deficit remains? The bitter truth is that subtle but persistent discrimination against people with intellectual disabilities remains rampant around the world. Sadly, most people still perceive a person with an intellectual disability as incapable of contributing to his community and thus, treat her as a liability that is all too easily ignored. The language we use is revealing: they are "in-valids", "retards", "dis-abled".It's a short distance from that type of discrimination to abuse and even murder, but it's an equally short distance from empowerment to dignity.

The phrase "out of sight out of mind" comes to mind. We shunt off people with disabilities to group homes, nursing homes, resource rooms at school, special seating at stadiums and in mass transportation. This sort of segregation is not only allowed but socially sanctioned. It is perfectly legal. It is also wrong and destroys the lives of millions of people with a disability. The disability does not matter--the social isolation and intolerance is simply wrong. What I want to know is when will this end? How many more people need to die before we as a society will not tolerate such abuses?

2 comments:

I have a mix of conditions that could just bump me off at any moment, and I have these moments in life where I see the newspaper headline about this disabled girl who died suddenly doing something really domestic and boring, like drying her hair or doing dishes,.. it is hardly a headline story! but to me thats the worst thought ever, that a 29 year old woman with everything else to live for except these conditions holding her back, wouldnt be considered a great loss to society. People who know me or are into my artwork wouldnt agree lol but I mean, like you mentioned, the general public view would probably be seen as an end of suffering, as if the illness makes all other matters in your life insignificant. I agree, its very sad, and very negative for social attitudes, it lends legitimacy to the kinds of doctors that shrug at me "whats the point? we cant DO anything." oh,.. thanks... well you know, I thought I'd ask as its my spine.. no? oh .. ok.

Always we judge most harshly by the things that matter least. Let me tell all of you a secret- before I was a model, I was a total ugly duckling. I didn't date in high school- boys acted as though I wasn't even there- it was as though I didn't even exist. Fast forward a few years to when I lost 35 pounds & my grandma gave me a makeover. Suddenly, I had a modelling career, I was beating guys off with a stick, & I got everyone's attention simply by walking into a room. Also, people stopped sitting on me because they didn't realize that I was there.It was very confusing. Inside, I was the same person who was trying to learn, grow, & show compassion for other people, animals, & our planet. Only the outside was different. However, the way people treated me was shockingly different. 6 salesmen practically got into a fight over which of them would help me buy socks. Call me crazy, but I don't think it takes 6 guys to help me buy socks. Before the makeover, I could barely get anyone's attention in a store. What's more, places where I'd been volunteering for years suddenly put me in positions of authority & started telling everyone how responsible & capable I was, and I found the timing just a little too convenient. Lookism -judging others by how they look, instead of on their qualifications & the things they can actually do- is ugly! On one end, you're ignored, & people wouldn't give you the time of day at a watch convention; at the other end, it takes 6 salespeople to help you buy socks & all of a sudden everyone thinks you're Superman or Wonder Woman, because you're a sex object & not because anyone has actually thought of you as a thinking, feeling person.It is my considered opinion that, instead of judging by appearances, all of us should respect each other as thinking, feeling people. When will we learn to love & respect others who are different from ourselves? When will we be free to be you & me?